Ian Lipkin Outlines an Advocacy Plan

The short of it:
Dr. Lipkin is seeing constant immune activation in CFS/ME patients which is causing our disability, but does not have the resources from the NIH and CDC to find out what is causing it.

There are sympathetic figures at the NIH and CDC that are willing to look for the cause of this immune activation if they are given money to do so.

He also makes a direct comparison to the early days of HIV and AIDS. It is obvious to me from these hints and innuendos that he strongly suspects we are infected with a pathogen that our immune system cannot clear on its own, and he is telling us to push the federal government to give the CDC and NIH more money specifically to study this, while people like Tom Frieden and Tony Fauci are in position to direct the funding appropriately.

Now, with respect to polyclonal B cell reactivity, as I mentioned in the very beginning, in work that we published in the 1990’s that is Birgitte Evengård, and I published together, we found evidence of polyclonal B cell reactivity and at that point, we described in the final paragraph of the paper we wrote, and we describe specifically as to whether borna virus could be implicated in Chronic Fatigue Syndrome, we said, in fact, that we were unable to find any evidence of that, genetic or antibody based; but at that point, as many of you will recall, there was a very strong sentiment in some portions of the scientific and clinical communities, not all of it, but in some portions of the community, that this is a psychological illness. And what I said was that, based on our findings, we had very strong evidence that people with Chronic Fatigue Syndrome were ill. It was a real, physical illness, and they deserved a deep dive to find out why they were ill. This was back… you know, we wrote this paper in 1997, a long time ago, and I am now pleased to see that people are paying much more attention to this disorder and what we can do about it.

That said, our evidence suggests, based on the cytokines that I’ve described to you, that there is, in fact, ongoing stimulus to the immune system which results in activation and may well account for many of the symptoms associated with the disease.

The challenge, as I’ve said, is that we have no resources to go after identifying what it is that is stimulating these responses. So, again, I think it is critical that you apply pressure on your congressmen and your senators to generate more research funding for Chronic Fatigue Syndrome research, and if you have the means yourself to do something about this, that you become invested in it because we are partners in this thing. We cannot do this work without your support. We do not have the resources to do what is required. I remember in the very early days of HIV/AIDS when I was still a trainee at the CSF in fact, it was very early days. And in those days there was very little support for HIV/AIDS. It really took advocacy to force that.

Now you’ve got a number of people who are very receptive to this. Tom Frieden is receptive to it. Tony Fauci is receptive to it. But their hands are tied right now because of sequestration. So it is important to that you do something to propose additional resources be allocated to the National Institutes of Health, the Centers for Disease Control, so that this work can proceed, and so that we can get the answer that we need.

@Christopher - I believe that longtime patient advocate and investigative journalist Hillary Johnson may not agree with the idea that Tony Fauci could be our white knight. Perhaps some additional reading/research on the subject might be worth looking at.

@Christopher - I believe that longtime patient advocate and investigative journalist Hillary Johnson may not agree with the idea that Tony Fauci could be our white knight. Perhaps some additional reading/research on the subject might be worth looking at.

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OK Wally, but it seems the closest thing we have to a "White Knight" in the federal government is Dr. Lipkin, who has plead with patients to advocate a few months ago. I believe he is willing to find the answer, but does not have the resources to do so.

Funding can either come from private donations (such as the CFI), patient-led initiatives (Jen Brea raised $200k from patients for her CFS/ME documentary), or the federal government - those are 3 avenues to attack.

OK Wally, but it seems the closest thing we have to a "White Knight" in the federal government is Dr. Lipkin, who has plead with patients to advocate a few months ago. I believe he is willing to find the answer, but does not have the resources to do so.

Funding can either come from private donations (such as the CFI), patient-led initiatives (Jen Brea raised $200k from patients for her CFS/ME documentary), or the federal government - those are 3 avenues to attack.

Does anyone know who is funding Jose Montoya's research at Stanford?

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An anonymous donor.

If you talk to researchers about the "money" part of this equation they would be thrilled to receive funds from private sources, but the reality is that to sustain this type of research over the long run, they need government funding. This money will need to come in the U.S. from the federal government (U.S. Congress). There are lobbying efforts already underway to step up the push for more federal funding. Hopefully, in the next few weeks a strategy to get more people involved in this effort will be able to be presented to the patient community. Right now there is lots of hardwork going on behind the scenes.

I also believe there are people here on the Forum who are already talking about a crowdsourcing project. All of these ideas for raising money for research are good ideas, it just will take a lot of support by the patient community to make them a reality.

If you talk to researchers about the "money" part of this equation they would be thrilled to receive funds from private sources, but the reality is that to sustain this type of research over the long run, they need government funding. This money will need to come in the U.S. from the federal government (U.S. Congress). There are lobbying efforts already underway to step up the push for more federal funding. Hopefully, in the next few weeks a strategy to get more people involved in this effort will be able to be presented to the patient community. Right now there is lots of hardwork going on behind the scenes.

I also believe there are people here on the Forum who are already talking about a crowdsourcing project. All of these ideas for raising money for research are good ideas, it just will take a lot of support by the patient community to make them a reality.

Wally

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So what is going to happen with something like the CFI, which is privately funded?

@Christopher. Not really sure what you mean by what is going to happen? I would assume that private initiatives like the CFI will continue to fund CFS projects until funds run out and/or there are no projects that they choose to fund. I believe the Hutchinson Foundation funded the start up of the CFI with a $10 million dollar donation. You could certainly try to contact this Foundation to obtain additional information about any plans that they may have beyond what is currently listed on the CFI website. http://cfinitiative.org/